Hi, this is all completely new to me I feel like I've just had my entire world pulled from underneath me. I'm female, 28 years old, married with 2 daughters. I was referred by my gp after noticing a large lump above my collarbone back in mid November. I've been completely well in myself besides this dull achey pain which I assumed was muscular but went and got it checked anyway. The gp said possible cyst but referred me and I went for an ultra sound. He then explained that I would need to have a fine needle biopsy so they could do further testing. On my notes it says ' the ultra sound demonstrated a cluster of pathological lymph nodes, fine needle aspirate from which is suggestive of a hodgkin lymphoma no B symptoms. ' I went to my clinic appointment accompanied with my husband where the doctor and nurse both went into a little more detail but didn't overwhelm us as they still need to do further testing. I am booked in 5th January for a second biopsy which they call a core biopsy and I'm still waiting on a date for my PET scan. On the 12th of January I am back at clinic with my doctor and nurse to hopefully review the results with a diagnosis and see what stage /grade it is and put my treatment plan in place.
I am just wondering if there is anyone who's in a similar boat? I don't really know what reply I'm after other than I'm not on my own. It's been difficult as I'm still not entirely sure what's going on and I've been strongly advised to shield so I'm off work sick at the moment as I work in retail so I've got more time to think and I'm going mad, we've just gone into tier 4 and I've got to have a covid swab on sunday in preparation for my biopsy on the tuesday it's all a little crazy! I'm sorry for waffling and I am very grateful to anyone who has a chance to read this! X
Hi Rebecca and welcome, I am dropping in past from our Non Hodgkin’s Lymphoma groups just to say I hear you.
The journey you are on will get every head on these blood cancer groups nodding. Until ALL the results are in you are still in the dark.
A core biopsy and CT are the main tools used to get the truth, the challenge is that it will take time for all the results to be put together and a plan put in place...... but hear me when I say that blood cancers like HL and NHL are very treatable with great results.
Don't over research this especially on Dr Google as this will take you down rabbit trails. Her are a few links to some useful info from Lymphoma Action.
https://lymphoma-action.org.uk/about-lymphoma/tests-diagnosis-and-staging
https://lymphoma-action.org.uk/types-lymphoma
Keep posting and we are here to help out as best as we can and answer questions ((hugs))
Have read through some of the info I have given you and do come back with your questions..... as you will have lots.
You now need to start to prepare for your appointments so I would suggest you start a notebook,I have note books going back to 1999 (hit my name for my story).
The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get.
If you don’t understand something you stop the Consultant and ask them to put it into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
The note book should have questions like:
What type of condition has been diagnosed? - exact name and stage etc.
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.
I will add this great info on questions to ask a team produced by Lymphoma Action.
lymphoma-action.org.uk/.../LYMweb0014QsMedTeam2020v4_PDF_information_sheet.docx.pdf
